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Wednesday, March 9, 2011

Special Agent Oso

Sometimes I believe in magic and sometimes I don't. Jacob was born on 10/10/2008. He was admitted to the hospital with pneumonia on 10/10/10, which postponed his surgery. The first incision was made at 10:10 am on 12/22/10, which is the birthday of my dear friend Zinovia's son Christopher. Coincidence perhaps but I am receptive to magic.

As I was driving yesterday, a whisper went through my mind. Vaccine. Although in October, we suspected that the FluMist vaccine may have been the underlying cause of Jacob's pneumonia, the health professionals we encountered dismissed our suspicions. And so did we.

But today I reviewed the following product information...

---------------------WARNINGS AND PRECAUTIONS----------------

·Do not administer FluMist to children [less than] 24 months of age because of increased risk of hospitalization and wheezing observed in clinical trials.

·FluMist should not be administered to any individuals with asthma or children [less than] 5 years of age with recurrent wheezing because of the potential for increased risk of wheezing post vaccination.

... and decided to send the following email.

Dear Sir or Madam,

My son Jacob received the FLUMIST vaccine last September. He was 23 months old and had a brief history of wheezing. Within a few weeks, he developed cold-like symptoms and was prescribed an inhaler. Shortly after, he was admitted to the hospital with pneumonia and stayed for about five days. After finishing a course of antibiotics at home, he developed pneumonia again for which he was hospitalized and treated with antibiotics. He had attended daycare in the interim between pneumonia infections, so after the second infection, I pulled him from daycare because he was scheduled to have neurosurgery in December. For six weeks prior to surgery and about 4 weeks after, Jacob remained healthy. Then he began to develop cold-like symptoms again. He returned to daycare and within a week he was diagnosed with a mild strep throat infection. After finishing another course of antibiotics, Jacob was again diagnosed with pneumonia but because we had caught it early, he was able to go home with us and resume antibiotics. Shortly after this course of antibiotics was finished, he was admitted again to the hospital with pneumonia. After just finishing another course of antibiotics, Jacob has now been diagnosed with an ear infection and is on antibiotics again.

I have read the information online about the vaccine but I have a few specific questions that I could not find. Is it understood exactly what about the vaccine or the body’s response to the vaccine that might cause respiratory distress or infection? Could it be that Jacob may have been exposed to influenza virus strains at daycare that are included in the vaccine and that when his body goes to mount a response, his immune system in effect attacks his lungs? Is there something about the vaccine or the body’s response to it that would leave his lungs “compromised”?

The first response that was sent included the same product information that I had already read so I sent a follow up email and this was the response...

Our policy is to answer complex medical questions for health care providers. We are able to discuss very complex questions with doctors, nurses or pharmacists who have the knowledge to understand scientific literature and know the complete medical picture of the patient.

Apparently I do not have the knowledge to understand very complex medical questions.

His Story

Jacob was diagnosed with Infantile Spasms on May 7, 2009, two days after we observed his first jacknife seizure. He was admitted to Hasbro Children's Hospital that afternoon to begin a course of treatment with ACTH. The next day, an MRI revealed the cause of the Infantile Spasms, a stroke in utero. Two-thirds of the left hemisphere of Jacob's brain was replaced by cerebro-spinal fluid. We were discharged after four days and continued the ACTH treatment. After four weeks, the Infantile Spasms and hypsarrhythmia on his EEG were resolved but another seizure type emerged, complex partial epilepsy and myoclonic seizures.

Jacob also is diagnosed with right hemiparesis, slight paralysis of the right side of his body. Jacob has made great strides walking independently but has limited functional use of his right hand. In February, Jacob participated in the Constraint Therapy Program through Hasbro Children's Rehabilitation Center and participated again in August. The program involves intensive therapy with his right arm and hand. Jacob also receives physical and occupational therapy and speech therapy through his Early Intervention Provider.

On December 22, 2010, Jacob underwent a left functional hemispherectomy, disconnecting the left hemisphere from the right hemisphere. Our hope is that he will be seizure-free and off of his anti-seizure medication.

Although early detection, aggressive treatment, intensive therapy, and self-advocacy have been essential to Jacob's rehabilitation, Jacob is blessed. He is an amazing surprise.